1 Paediatric Palliative Care Centre, Children's and Adolescents' Hospital Datteln, Department of Children's Pain Therapy and Paediatric Palliative Care Witten/Herdecke University , Datteln, Germany .
J Palliat Med. 2013 Sep;16(9):1034-9. doi: 10.1089/jpm.2013.0014. Epub 2013 Jul 31.
Awareness for pediatric palliative care in children with cancer increased in the last ten years in Germany. In this study we sought to determine whether this change in awareness led to improved palliative care outcomes in children dying due to cancer.
In 2005 we interviewed a cohort of 48 bereaved parents who had a lost a child to cancer approximately five years earlier (2000 cohort), and in 2010 we interviewed another cohort of 48 parents who had lost a child due to cancer approximately five years before (2005 cohort). Children of the 2000 cohort were cared for by six specialized oncology departments in North-Rhine-Westphalia (NRW), Germany, and children of the 2005 cohort by 16 specialized pediatric oncology departments in NRW, Germany. Parents of both cohorts were interviewed using the Survey of Caring for Children with Cancer (SCCC).
The children of both parental cohorts were similar in terms of disease characteristics and sociodemographic variables. Children suffered in a very similar manner from core symptoms such as pain and dyspnea. However, symptom treatment increased for all symptoms. In case of treatment of anxiety the increase was statistically significant (p=0.035). Location of care changed with almost three-quarters of the 2005 cohort receiving palliative home care, significantly more than in the 2000 cohort (p=0.007). Additionally, fewer children of the 2005 cohort died in the intensive care unit.
While the location of care during the end-of-life period shifted (from hospital to home), there remains substantial work to ease the suffering in children with cancer at end of life.
在过去的十年中，德国儿童癌症患者的姑息治疗意识有所提高。在这项研究中，我们试图确定这种意识的变化是否导致了癌症死亡儿童的姑息治疗结果得到改善。
2005 年，我们采访了一组大约五年前失去癌症儿童的 48 位丧亲父母（2000 队列），并于 2010 年采访了另一组大约五年前因癌症失去孩子的 48 位父母（2005 队列）。2000 队列的孩子由德国北莱茵-威斯特伐利亚州的六家专门的肿瘤科治疗，2005 队列的孩子由德国北莱茵-威斯特伐利亚州的 16 家专门的儿科肿瘤科治疗。两个队列的父母都使用了《儿童癌症护理调查》（SCCC）进行采访。
两个父母队列的孩子在疾病特征和社会人口统计学变量方面相似。患有核心症状（如疼痛和呼吸困难）的儿童非常相似。然而，所有症状的治疗都有所增加。在焦虑症的治疗中，增加具有统计学意义（p=0.035）。治疗地点发生了变化，几乎四分之三的 2005 队列接受姑息性家庭护理，明显多于 2000 队列（p=0.007）。此外，2005 队列的儿童在重症监护病房死亡的人数减少。
尽管临终关怀期间的治疗地点发生了变化（从医院到家庭），但在减轻癌症儿童临终时的痛苦方面仍有大量工作要做。
